David J. Elpern, M.D.
First published in the International Journal of User-Driven Healthcare, 2011. Volume 1, page 25-26
Keywords: acne, isotretinoin, hallucinations, auditory hallucinations, nightmares, suicidal ideation,
Abstract: This is a joint patient and health professional narrative that emphasizes possible utilities of a persistent clinical encounter between patients and health professionals toward improving health outcomes. The patient reports an important side-effect of isotretinoin hitherto under-reported in the literature as discovered by her physician after web based searching. This experience led him to further reflect on possible causes of prior reported side effects of the drug such as suicidal ideation
My name is Leah. I am sixteen years old and I attend high school. I have had acne since I was in fourth grade. Living with acne is something no person wants to deal with, but when they have it they need to find a treatment for it. A couple of months ago my doctor recommended I see a dermatologist; so they recommended Dr. E.
The first meeting I had with Dr. E, he knew he had to do something about my acne. He talked to my mom and me about different medications for my face. Both my mom and I agreed upon isotretinoin. There are some side-effects that are not so pleasant, like dry lips, but that is manageable.
I was on isotretinoin for one month at a dose of 30 mg a day. I saw tremendous results after a few weeks on it. I had almost clear skin. It was amazing. But then there were a few drawbacks.
One of the first strange side effects I experienced was nightmares. They were not good. I told Dr. E. about them. The nightmares were not every night, but enough that I didn’t like them.
The next strange and frightening side-effect was hearing voices.
I would be walking in the hallway at school with a friend at my side and no one else in the hallway. I heard someone call my name, it sounded like it was an announcer on a TV show. I turned around really fast and my friend asked “What happened” and I was like “Did u hear that?” and she answered “No, hear what”. We went on with our day and went to our classes.
Several days later I was in the bathroom when I heard a man’s voice saying, “Leah” in a deep raspy voice. I tried to ignore it. Then it said “Go kill yourself.” now I am in tune with the feeling that this is no joke. The voice kept on saying “Your family doesn’t like you, just go die, go in the kitchen and take a knife and kill yourself.” To the reader: this event was not fake. It happened and my body shook in panic, I couldn’t speak, I couldn’t scream or do anything to make the voices go away. I just stood there listening to the outrageous crazy voice. I started to cry and my nose started bleeding because I was fighting off a little cold. The voice did not go away. It said “See you are bleeding already. Just take another step and kill yourself.” I managed to move my feet and get to my parents and told them everything I heard.
The next morning my mom called the doctor and he told us to come in right away. He stopped the medication. The voices disappeared that next day.
Dr. E: Leah is a teenage girl with severe cystic acne. She had large cysts on face, chest and back. These healed with significant scarring. In this scenario, isotretinoin is the drug of choice.
We qualified her for the iPledge Program1 and she was started on 0.5 mg per kg. I talked about the side-effects with her and her mother and these included mood changes and even suicidal ideation. We did not discuss auditory hallucinations and nightmares because these are not mentioned in the literature. There is one article in PubMed that mentions dreams and isotretinoin and this does not refer to nightmares.2. I could find no mention of auditory hallucinations as a side-effect of isotretinoin, but wondered if some of the suicides on this drug were triggered by voices.
Leah, her mother and I agreed to stop the drug; but they wanted to rechallenge her because the therapeutic results were so dramatic. This got me nervous, because it was uncharted territory; but her family is responsible and I’ve known them for some time. I started her back on 10 mg per day, the smallest dose. In ten days, I received a phone message informing me that the nightmares had returned and that Leah felt weird. Apparently, she had not heard command hallucinations yet; but Leah and her parents were scared and stopped the isotretinoin.
There is no useful literature here for managing this teenager with no history of paracusia or nightmares prior to using isotretinoin. Could this be suggestion from reading the iPledge literature or is this an idiopathic, but previously unreported, side-effect? I hope it just goes away and that we will never know. Could Leah have a predisposition for psychiatric disease? It may take years to know. As the prescribing physician, as a dermatologist with no advanced training in psychiatry, continuing istretinon in this situation is untenable. Even the rechallenge made me uneasy, but the patient and her parents wanted to do that.
Reference:
- iPledge Program: https://www.ipledgeprogram.com
- Gupta MA, Gupta AK. Isotretinoin use and reports of sustained dreaming. Br J Dermatol. 2001 Apr;144:919-20